Wednesday, July 25, 2007

My job – A patient encounter

When I ran short of breath mid-sentence, I was caught off guard.

I was not saying anything that I had not spoken a hundred times.

Still, after the words, “It is my job to…” I had to stop.

You see, when discussing HIV with a recently diagnosed HIV+ 11 year old child, I prefer to keep things upbeat. The more reassuring and routine the chat, the better.

It is no time to gasp, whimper, or sob, for no child will interpret these emotional sounds as reassuring.

Siyabusa had been brought to the Swaziland Baylor Center of Excellence by three ex-patriots who run a near-by orphanage. Well, not so near. They had awoken at 4:30am so that they could make it to the Baylor Center of Excellence before seven. (They were eighth in line.)

The child had been moved to the orphanage the evening before because his mother was coinfected with HIV and tuberculosis, very sick, and unable to care for him.

Siyabusa spoke no English but was handling the transition well. Upon arrival to the orphanage, he had been excited to learn that he would be receiving not one, not two, but three meals a day, and that he would have help cooking them.

Siyabusa’s body was covered with scabies lesions. Many were bloody or scabbed from his scratching. The month prior, he had been in the hospital for scalp abscesses. Fortunately, the remaining hair hides most of the scarring.

He is a mild-mannered boy. He smiles readily. His face is thin, his eyes fixed on me and the translator, his gaze reverent but hungry.

No, I would not let this child see me cry.

After Siyabusa entered the exam room, it took no more than five minutes to address his medical problems. A mild bacterial pneumonia and severe scabies required two medicines and an x-ray. I added a third drug for the incessant itching. His left eye was infected with another type of bacteria and required some eye drops. Finally, he would receive multivitamins and routine prophylaxis with cotrimoxazole (Bactrim) until we knew his CD4 count.

That was the easy part.

“Does Siyabusa know about his status?” I asked the caregivers.

“No” was the collective response.

“Siyabusa, are you sick or healthy?”

Lulu translated.

“I am often sick,” Lulu said, translating his response.

“Do you want to grow up and be a strong, healthy man?”

“Yes.”

“I want that for you too.”

I then asked the child if he knew what a soldier cell was.

He did not.

I explained to him that it is a cell that fights bad germs in the body, just like a soldier fighting in a war. I told him that soldier cells, also called “CD4 cells”, keep the body healthy.

He nodded.

I told him that we were going to check his blood to see if his soldier cells were many or few. If they were few, then we would help him build up the army so that they can keep his lungs, skin and eyes healthy.

I asked him if he had ever taken medicine. He said that he had taken medicine for the infection on his scalp. I explained that there are also medicines that help the army of soldier cells get stronger so that Siyabusa could also get stronger…and healthier…and bigger.

“If your soldier cells are low, we will give you this medicine.”

He nodded.

To ensure that he got it, I asked him, “Do you want your soldier cells to be high or low?”

“High,” he said, his eyes fixed on me to make sure that he was correct.

I gave him a congratulatory high five and said, “It is my job to…”

When I ran short of breath mid-sentence, I was caught off guard.

The remainder of my sentence was imprisoned somewhere between my lungs and larynx, and in their place salty water was being freed onto my eyeballs.

I was unsure if I was happy or sad, clueless whether I was experiencing an instant of confusion or clarity. All I knew is that I wanted the freedom to choose my words, speak them, and reassure this scarred, itching child with a dying mother. I wanted him to know that, though before last night he ate only once a day, he deserved three meals daily, and snacks. I wanted him to understand that, though his skin was infested with mites, his hair patchy, and his left eye red and swollen, he did not deserve the scabs, scars, and conjunctivitis.

I scanned the room to spread out the clear teary fluid that was pooling in my own eyes so that it did not fall and betray my message of reassurance. I swallowed hard and breathed in slowly in an effort to regain control of my throat and lungs.

I then began again.

“Siyabusa, it is my job…to help you keep your soldier cells high. Can you come back next month and help me do that?”

“Mmm.” He said in affirmation.

“Yes, he can,” the translator echoed.

Another high five.

Siyabusa stood up to go and, as I shook his hand, I felt the coarse scabs and burrows of the scabies mite close around my fingers. With his other hand, he scratched his stomach.

“Good luck in your new home. See you soon, Siyabusa.”

He gave me an upbeat, reassuring smile and followed the ex-pats to the pharmacy.

I smiled back. It was one of those deep, what-a-gift-it-is-to-be-here-and-now smiles. I wear it still as I sit here and marvel at the fact that I get paid to help Siyabusa and others like him get their CD4 cells back.

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5 Comments:

At 9:49 PM, Anonymous kristin said...

amazing story. i can't stop crying. thank you for sharing all of this with those of us who can easily forget to count our blessings. thank you for sharing yourself and you abilities with these so-deserving children. they are so fortunate to have you as i am fortunate to have you as a window to see into their lives. i am so proud to have you as a cousin.

 
At 5:03 AM, Blogger teesa said...

hi ryan,

how are you? this is theresa, the asian medical student who shadowed with ariana back in june. i was searching for the coe address and stumbled upon your entry. it's nice that you keep a log of your experiences. just wanted to say hi and keep up the great work :)!

theresa

 
At 9:46 AM, Anonymous Anonymous said...

Hi Ryan,

My name is Nicole and working for an organisation in Durban, South Africa who is tasked with developing psychosocial tools that can be used by heath care workers to speak to children about their HIV illness. I was wondering with this blog that you wrote if you told the 11 year old his status at all are did you just keep it to mentioning about his soldiers. If yes, what was your reason for not telling him all? Hope that makes sense?

 
At 1:57 PM, Blogger Ryan said...

Thank you, Nicole, for that very pertinent question. I am current in South Africa giving a training, and just an hour ago gave a lecture to a group of nurses and docs about this every issue (namely, disclosure). Eleven years old is a very good time to begin to discuss specifics, depending on what the child already knows. Disclosure being a step-wise process and eleven year-olds being a very heterogenous group, the appropriateness of discussing "HIV" itself is case-specific, as you know. In this case, I believe that the status conversation happened later on. If you'd like me to share what I have with you (re: tools) please let me know. I have colleagues in Botswana (where I now live) and Durban (where you live?) that would be happy to be in touch with you regarding this important task. Thank you for your interest.

 
At 1:57 PM, Blogger Ryan said...

Thank you, Nicole, for that very pertinent question. I am current in South Africa giving a training, and just an hour ago gave a lecture to a group of nurses and docs about this every issue (namely, disclosure). Eleven years old is a very good time to begin to discuss specifics, depending on what the child already knows. Disclosure being a step-wise process and eleven year-olds being a very heterogenous group, the appropriateness of discussing "HIV" itself is case-specific, as you know. In this case, I believe that the status conversation happened later on. If you'd like me to share what I have with you (re: tools) please let me know. I have colleagues in Botswana (where I now live) and Durban (where you live?) that would be happy to be in touch with you regarding this important task. Thank you for your interest.

 

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